In 2015, the Infectious Diseases Society of America opened comments for its proposed Lyme disease guideline revision process. Although the Institute of Medicine standards on creating trustworthy guidelines, requires that those affected by guidelines be included in the process, the IDSA proposed panel did not include a Lyme disease patient.
On March 24, 2015 LymeDisease.org launched a study focusing on outcomes Lyme disease patients value. Over 6,000 people responded. This study was the first to report not only quantitative responses, such as the percentage of patients initially misdiagnosed, but also individual open response comments by patients.
LDo presented the results of the study, which drew over 6,000 responses in one month, to the IDSA as part of the comments that it filed together with the national Lyme Disease Association on behalf of over 63 Lyme disease patient advocacy groups in the United States. View Comments To IDSA
The report on this study consists of two parts.
Key points from the survey regarding the guidelines revisions follow.
Over 85% of patients believed that:
87% believe that obtaining higher rates of success in the treatment of early Lyme disease is critically important.
82% believe that it is critically important that patients be given the option to be tested for Lyme disease even if they live in a state where Lyme disease is not regarded as common.
47% reported that they had had testing delayed or denied because it was not considered common in their state. 60% reported that their diagnosis was delayed on this basis. 69% reported the delay in diagnosis was more than a year.
60% reported that the intensity of their symptoms was severe or very severe.
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